July-8-2020 | Danielle Davis
There are moments where you are enjoying life and never think that anything could go wrong. In December of 2015 our family was hit with a crazy oddity that was nothing we could have ever dreamed.
It was Christmas break and thankfully I took the time off to be home with all my kids while they were out of school. My oldest is Elaine, whom we all call Lainey. She had just started working her first job with me at the local call center. I took her for the first late-night shift she ever worked on December 28. The next morning was when hell began and didn’t stop until late April/early May of 2016.
On December 29, Lainey woke up and wasn’t quite right. As a parent knowing how the young kids are, I started thinking maybe she was just tired or that maybe she tried drugs to be cool with the people she worked with the night before. When she got up, she was out of it. Throughout the day, she kept seeing things that her brothers and I didn’t, as well as making weird statements. I literally thought my daughter was a bit crazy.
By the morning of December 30,, she was much worse. She didn’t know where she was or that she had to get to work. When I had her get up to go take a shower, I found her outside in the cold, without any shoes on, trying to get in my car to take her shower. Once I was able to get her inside, I had to shower her myself because she acted like she had no idea how to clean herself.
By this point, I was so concerned that I called her work and told them she was sick. I then drove her to the ER in St Joseph, MO. Once there, they took her back to the area for people who may need to be admitted to a psychiatric ward. They had her strip down and put on a hospital gown. A guard sat outside her room and it took several hours before they confirmed anything. They took tests and ruled out drugs as well as alcohol. The doctors had no true reason as to why my beautiful angel was acting so crazy. The only answer they could give was that she had a UTI and when elderly people have these it can cause dementia for them. So, they prescribed some meds—one of which I couldn’t even get for 24 hours after this visit—and said if she wasn’t better in two days to come back. It was like they knew I would have to come back.
We went on about our days as usual as we could with a teenager that was deteriorating before our eyes: she barely slept; her paranoia worsened; and, late at night while home, she had a couple moments of aggression. When December 31 came around, she couldn’t dress herself, remember how to eat or drink, and barely remembered how to walk. Our family always got together on New Year’s Eve and everyone knew that something was wrong with my sweet girl. I made the decision then, that if by morning she hadn’t shown any signs of improvement, I was going back to the hospital and not leaving until they could help my daughter get back to herself.
We arrived at the ER again in St Joseph, MO, and started a multitude of tests. None of them came back with any signs of what could be wrong. The doctors looked at me and said they had no idea what was wrong with my daughter. That was not good enough. I told the doctor that something is clearly wrong and to figure out where my daughter could be sent to get answers that wasn’t a psychiatric ward because I knew in my soul that she was not crazy. By 9 p.m. that night we were sent via ambulance to Children’s Mercy. I had no idea at that moment, that this was going to be the place that saved my daughter from an evil no one else would have ever recognized.
Early in the morning on January 2, I met the men who were sure they knew how to help Lainey: Dr. Aalbers and Dr. Allison. They explained to me that they were sure from the symptoms that she was presenting with, that they wanted to test for this rare illness called Anti-NMDA Receptor Encephalitis. I had to agree to let them attempt a spinal tap for them to get the fluid that was needed. They also added a bunch of wires to her head in order to check brain waves. Once I spoke with them and agreed to all the testing, I of course did research on what they had discussed with me. After reading articles on the internet, I was convinced that these two extraordinary men had found the way to heal my baby and get her back to her normal self. We spent months at Children’s Mercy in Adele Hall. On January 11, we received the result from the CSF, stating that Lainey truly had Anti-NMDA Receptor Encephalitis. This is when we began all the treatments that would get this disease under control.
Who knew that the antibodies in your own body could backfire making them attack the brain cells instead of the actual cells that were caused by an illness? Most of the medical documentation stated that women would need to be screened for teratomas as this would be the leading cause of what brought on the illness. Unfortunately, Lainey was negative for teratomas. We still have no real reason as to why she now has Anti-NMDA Receptor Encephalitis, except that someone higher than us knew that we could handle anything they put on our plates.
At one point I was certain that the doctors had no idea what to do, so we had a medical conference and one of Lainey’s doctors that week reached out to Dr. Dalmau. This doctor received an email back from the man who first diagnosed this and was told that what was being done is exactly what he would do. So, we kept to that course moving forward from that point. It took another 75 days after this before we started to see Lainey “wake up.”
They call it waking up because most patients have no memory of anything that happened to them while deep in this disease. That is true for my daughter. Her main memories of how she became sick and most of her hospital stay are from my stories to her. I have told her every detail she has asked for. To this day, she still will take me with her at times in order to help with information that she doesn’t remember well.
We got close to so many doctors, nurses and care assistants. It was a long hard battle. Lainey worsened before getting better. We spent many days in heightened paranoia states. She had more than her share of aggressive moments, which eventually meant that for the safety of herself and others, the doctors had to start using restraints. I was super happy that stage didn’t last long. There were weeks of two steps forward with six backwards.
Lainey experienced many different treatments. She took Rituxan twice. Had weekly treatments with Cytoxan. She was on melatonin, steroids, Ativan, Benadryl, Zofran, clonidine, IVIG, trazadone, and Cellcept. I am sure I forgot some of the meds that got her back on track to a state of remission, but the main ones are here. She made it through multiple MRIs, EEGs, spinal taps, PT, OT, speech therapy, and even having her eyes checked on from all the steroids she was on. We were released on May 4 to Lakemary in Paola, KS. She was at this facility for 23 days before being released back to my care. We had to be sure that she was not going to be harmful to herself or others before coming home for good.
That summer she spent as much time with her brothers and her horse as possible. She had her 18th birthday and was excited when she was able to go back to school with an IEP. She fought hard to get back to herself and once that happened, she did everything she could to prove that she would beat the odds. She attended her senior prom, lots of dances, and was featured in St. Joseph Newspress for showing that she could graduate with her peers despite all odds.
Since graduating from high school, she has completed all treatments for her illness and is currently in remission. We call it remission because at any point this horrible devil could come back and Lainey has the possibility of having a relapse. She worked full time and at one point held down more than one job. Lainey is back to her normal stubborn, hardheaded self. She gave birth to most handsome little boy on November 13.
All of these things were items that doctors said may not ever happen for her. At one point we weren’t even sure if she would ever “wake up” from all of this. Still to this day, she doesn’t remember much of her hospital stay at Henson Hall. Lainey remembers a lot of her nurses and care assistants because they were some of the ones there as she was coming out of the so-called fog that this disease causes in the brain. We still give big shout-outs to all our people at CMH and are more than thankful to have found people who knew how to help us. She still has lots of issues with her memory, some of her muscle spasms are still there, and when she is sick, she knows I will still ask all the same questions that she had to answer when she was sick. I truly believe that once you experience something of this nature it builds sort of a post-traumatic syndrome in the people who are caregivers.
I never stop worrying or looking for signs that she may be going into a relapse. I have a hard time when we don’t speak often and get worried more than I probably should. I do, however, say a prayer everyday thanking those above that she is here and healthy, living a normal life that I was told to prepare for her not to be able to have. I also say prayers for all the other warriors afflicted with this deadly illness.
We give thanks to all her doctors who helped us through this at Children’s Mercy in Kansas City: Dr. Aalbers, Dr. Allison, Dr. Cooper, Dr. Tobler, Dr. Coffman, Dr. Cation, Dr. Becker, Dr. Lepichon, Dr. Hema, Dr. Korth, Dr. Hall, and I am sure there are some I can’t remember.
CAs and Nurses: Lauren, Kelsi, Brian, Chrissie, Rita, Courtney, Julie, Kaitlin, Heidi, Steph, Rachel, Shannell, Alisa, Terri, Laura, Elizabeth, Codi, Lena, Skylar, and Ann. Just to name a few.
Child life – Gretchen and Sandy. OT and PT. Speech: Gayle.
Lakemary – Marcy, Mary, and Courtney. Plus, all the house staff and teachers.
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